When I tell people that I provide dementia care, the most common response is an exclamation of sympathy and a comment about how patient I must be. But, I’m not a particularly patient person and I rarely feel called upon to be patient with my clients. Why is that?
The secret to a more enjoyable experience in caring for someone who has dementia lies in our expectations. Here’s what my expectations are when I’m with someone who has dementia.
Reminders and memory-jogging will not work. When I was raising my children, I spent a lot of time explaining what they needed to do and then reminding them of what they had forgotten. When they had a test at school, I helped them by quizzing them on spelling words, times tables, and history facts. I expected repetition and reminders to be effective. They were effective, because my children had the ability to retrace their thought processes and recall information.
With my clients, I do not expect memory testing to work. People experiencing dementia are losing memories, but they are also losing the ability to remember. Quizzing them or jogging their memory will not help them remember. It will only help them feel embarrassed, inadequate, and lost. Instead of trying to jog their memory, I supply them with whatever information they need, whenever necessary.
My feelings and moods will be read expertly. I expect people who are experiencing dementia to be operating without rational thought and their intuitive thought systems to be operating normally. This means that they will be experiencing none of the distraction our rational thought systems provide, and will be left with more time to absorb our feelings and moods.
Whenever I am with someone experiencing dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy. There is always something from one of those categories available in the present. If not, we go for a walk or drive to find it.
Rational thought will not be available. I think of rational thought in terms of functions. The top three functions I do not expect my clients to be able to do are seeing cause and effect, prioritizing ideas or actions, and being able to follow the steps of a task or sequence. Because I don’t expect them to be able to do these things, I don’t try to explain it to them and then be frustrated at their inability to act accordingly. I accept that they simply do not have the capacity.
Although it seems obvious to me that icy sidewalks mean dangerous walking, I don’t expect it to be apparent to my clients. And, when we need to get ready to go somewhere on time, I focus our attention on the next thing that needs to be done, not the appointment or passing minutes. When a task needs to be done, we do it together as teammates.
When our expectations match what our companions’ capabilities, there is less stress for both parties. This is the secret to improving the dementia caregiving experience.